Caregiver talks about the struggles of early-onset Alzheimer’s Disease

By Katrina Goforth -

“There is really no hope,” Amanda Hayes said. Hayes has been a caregiver to her mother, Susie Young, since 2013 when she began showing signs of Alzheimer’s Disease. “It’s not like cancer or other life-threatening diseases that you can fight and potentially win against. There’s nothing we can do but watch.”

For Hayes, the effect of Alzheimer’s Disease on her mother and her family is a reality that she doesn’t like to sugar-coat, even though she spends her life as a baker sugar-coating most everything else. She says that the truth about caring for someone with the disease is brutal and awful, but it’s what those who go through a life-changing event need to hear.

In 2013, Hayes, her husband and their infant son moved from Colorado to Altus after her mother began showing signs of early-onset Alzheimer’s Disease, though doctors told the family it was depression.

“We originally thought she was just going through a lot of stress,” Hayes said. “She worked for Altus Public Schools as their treasurer and wore a lot of different hats, but when she came to visit us after my kiddo was born, my husband and I knew there was something wrong. There was no other option for us than to move home and take care of her. She’d have done the same for us had we needed her.”

After consulting their former family doctor, Randall Sheets, who had been practicing in Altus before moving to Lubbock, Texas, he referred her to a specialist who diagnosed Susie Young with Alzheimer’s diagnosis. It was determined that she had posterior cortical atrophy, also known as Benson’s Syndrome, a rare type of Alzheimer’s Disease that only affects 5 percent of those with the disease — 13 total cases in the United States.

“The worst part about this particular type is that she knows that she can’t read anymore or get dressed alone or add numbers,” Hayes said. “It’s not like the Alzheimer’s my grandmother had that made her unaware of what was going on around her. My mother knows who comes to visit and who doesn’t, and that’s hard.”

Hayes says that the last four years started out very lonely. She watched how alone her mother was and felt alone herself. Though there are support groups, she found it difficult to relate to those dealing with other forms of Alzheimer’s Disease.

“There aren’t many 36-year-olds dealing with this,” Hayes said. “My mother is going to be 58 in November and she’s been living with this since age 54. That’s not typical, but I know now that there are more like me.”

She’s found support through a Facebook group, Adult Children of Early-Onset Alzheimers Victims, that consists of mostly women from all over the world who are currently serving as caregivers to parents or spouses and those who have lost their loved one and are continuing to give support.

“We share stories and can be 100 percent honest about this,” Hayes said. “I can say things that other people would think are awful without a second thought because the people in this group all understand what it’s like.”

Though Young’s condition is very rare, of the 13 people in the country who have it, two of those have been in Jackson County. Hayes says that she found a safe place in her friendship with Fran Gabler who’s husband, Denny, passed away from the same rare condition.

With the help of her tight-knit family, her husband, and friends, Hayes has come to know her mother is not alone. Young has support from her children and husband, friends and family.

“My father is my biggest hero,” Hayes said. “He’s been with her since the diagnosis, leaving behind his business and embodying the true meaning of ‘for better or worse.’”

Hayes says she’s already begun mourning the loss of her mother. Though she’s happy to be able to love her longer and care for her, she says that the mother she knew is no longer there.

Though it can be confusing for Hayes’ 4-year-old son, she is glad that he gets to know his grandmother, even if they argue like children.

Hayes understands that it can be difficult to know what to do or what to say when faced with someone with Alzheimer’s Disease, but says that doing something is always better than doing nothing.

“Just show up,” Hayes said. “I’d rather have a 100 people who show up and say or do the wrong thing than to have no one show up at all. We get scared that we’ll make things worse, but that’s just not the case.”

Since 2014, Hayes has been an active part of the Alzheimer’s Walk. The first year, her team raised about $5,000 toward Alzheimer’s research. She’s participated twice since then, skipping a year to open her business, Life Is a Batch.

“It’s crazy to me that it’s 2017 and we still know so little about the disease,” Hayes said. “It won’t help my mom and it might not help me, but it could help my son.”

Hayes says that she’s passionate about Alzheimer’s awareness, including the Longest Day Alzheimer’s Walk that’s scheduled for Nov. 2 from 11 a.m. to 2 p.m. at Western Oklahoma State College.

Through the bad days and worse days, Hayes sees how this season of her life has changed everything.

“This experience has definitely changed me,” Hayes said. “I am a different person than I was four years ago. It has made me more aware that everyone is going through something hard, and this is ours.”

For more information about the Longest Day Alzheimer’s Walk, contact Debbie New at 580-482-7308.

Reach Katrina Goforth at 580-482-1221, ext. 2077.

By Katrina Goforth

Reach Katrina Goforth at 580-482-1221, ext. 2077.

Reach Katrina Goforth at 580-482-1221, ext. 2077.

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